What is Ewing’s sarcoma?

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Ewing’s sarcoma is a type of primary bone cancer. Primary bone cancers are tumours that start in the bone, rather than cancer that has spread to the bone from somewhere else in the body. Ewing’s sarcoma is usually diagnosed in children and adolescents. It is a very rare cancer with fewer than 100 cases diagnosed each year in the UK.

Most Ewing’s sarcomas arise within the legs and pelvis. However, it can arise in other bones such as those in the arms, shoulder blades, spine, ribs and collarbone. Less commonly, Ewing’s sarcoma can form in the soft tissues that support and protect the body’s organs (soft tissue Ewing’s sarcoma).

The most common symptoms of Ewing’s sarcoma are pain and swelling at the tumour site. These symptoms are often attributed to other causes such as injuries. A distinctive feature of Ewing’s sarcoma is that the pain can be worse at night. The pain may be so bad that it is difficult to fall asleep. Less frequently, symptoms can include fever, weight loss and tiredness.

A number of investigations may be carried out to diagnose Ewing’s sarcoma. These investigations include X-ray, magnetic resonance imaging (MRI), computerised tomography (CT) and biopsies. The biopsy should be performed at a specialist Bone Tumour Centre, which are hospitals that specialise in the diagnosis and surgical treatment of bone cancer (see Diagnosis, Step 3).

Following a diagnosis, a group of healthcare professionals called a Multidisciplinary Team (MDT) will have a meeting and decide the best treatment plan. Treatment for Ewing’s sarcoma usually relies on the combined use of chemotherapy, radiotherapy and surgery. It is important to start treatment as soon as possible as Ewing’s sarcoma can quickly spread to other parts of the body.

The National Ewing’s sarcoma Multidisciplinary Team Meeting was formed in 2011 and is a unique national forum set up to improve the treatment planning and choices made for Ewing’s sarcoma patients. This forum brings together clinicians and specialists from around the UK to discuss the treatment management and plans for current patients.

The overall five year survival rate for Ewing’s sarcoma is 50%. This means that 50 out of 100 people with Ewing’s sarcoma are alive five years after their diagnosis. After finishing treatment, patients will need to attend regular hospital visits to check the cancer has not returned and to check their general health.

Produced: March 2018

Published: December 2018

Review: December 2021

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About Us

The Ewing’s Sarcoma Research Trust was Matt Short’s idea.

Matt was diagnosed with Ewing’s in November 2007 and underwent fourteen cycles of chemotherapy and a below-knee amputation of his right leg in March 2008. Two years after the completion of Matt’s treatment (October 2010), Matt suffered a relapse and has undergone further intensive chemotherapy and surgery, this time to his lung.

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